November 29, 2015 at 3:11 pm #86944darlaParticipant
I am so sorry for your loss. I think we would all agree that dealing with and losing someone to this disease is by far the most difficult thing any of us have or will face. I’m glad you were there for her and able to do all you could to help her through this. I’m hoping that knowing that and realizing that at least for her the battle is over and she is at peace, no longer suffering or in pain will give you some comfort during these sad and trying times.
You and your family have my deepest condolences. Know that my thoughts and prayers are with all of you.
DarlaNovember 29, 2015 at 11:54 am #86943
Dear Kevin, I am so sorry to read about your LOVING Mum. Yes, she is now at Peace. I am sure she is very proud of her also LOVING son and who could ask for more.
It is hard to sing of oneness when our world is not complete, when those who once brought wholeness to our life have gone. Nothing but memory can fill the emptiness their passing leaves behind.
But memory can tell us only what we were, in company with those we loved.
It cannot help us find what each of us, alone, must now become.
Yet no one is really alone; those who live no more, echo still within our thoughts and words. What they did is part of what we have become.
We pay homage to our departed when we live our lives most fully, even in the shadow of our loss.November 29, 2015 at 9:18 am #86942
I am sorry that I have been absent from the forum for such a while.
My dearest mum, Maggie, passed away on September 11th after a 19 month valliant battle with CC.
I think we could have kept her going, but she just couldn’t handle the opiods…so that was the weak link for her.
She is now at peace. Thank goodness.
She was very much loved by many and took great comfort that I was engaged with so many of you on this wonderful website on her behalf.
Thank you to all of you who contribute to this amazing website. It is a wonderful resource. It was so helpful for me to be able to check out the experiences of others and to share ours with you. It was also so helpful to be able to check and test what Mum’s medical practitioners were telling us against others’ experiences.
This website and the contributions really empowered me in dealing with Mum’s condition as her frontline carer…and for that I will always be very grateful.
This was without doubt the most difficult thing I have had to go through in life. I am just very grateful that I had the time to do my best for my very loving Mum in dealing with this very vile disease.
Lots of love and thanks to you all
Kevin xAugust 16, 2015 at 10:09 am #86941middlesister1Moderator
I’m very sorry to read this, and so sorry your Mum had to go through the broken arm as well. You have done so much to help her with that balance with quality of life. I wish you and your family best wishes and comfort. You will be in my thoughts. Thank you for keeping us updated and sharing to help others along as well.
CatherineAugust 15, 2015 at 2:07 pm #86940
Kevin, I am so sorry to read this about your Mum. You all have REALLY been on a roller coaster ride and you are absolutely right when you write that now is the time for comfort. My Teddy was on Morphine and it worked very well for him. As the journey for his relocation progressed they just increased the dosage but he was more comfortable than not. I had been on Diazepam (Valium) for years, a small dose of 5mg and it is true everyone is different. It worked fine for me and I went off cold turkey no problems. Sometimes finding the right meds is a hunt and peck game.
I would like to tell you about a few things I did when Teddy had home hospice…..talk about comfort! I ordered a Hospital bed and put it in the living room where it was easier for the Nurses and comfortable for visitors AND where the big TV was. The Hospital bed really helps them get in and out of bed more easily and it has the guard rails. I then ordered, on line a lambs wool “sheet” to make the bed more comfortable, especially for the back. Also ordered a walker, wheelchair and a commode which he never used. His last month I ordered oxygen as it helps relax the patient therefor also helping any pain they might have. Kevin, we are here for you and I sincerely hope Mum stays in her comfort zone. Be strong, hang in and hang on. NO more roller coaster rides!August 15, 2015 at 9:44 am #86939
Just updating on Mum.
We have had a bit of a rollercoaster over the last few months.
Mum was started on FOLFOX back in June…after having completed 11 Cycles of GEM/CIS. GEM/CIS was well tolerated.
FOLFOX was not so well tolerated and following two cycles was suspended by Mum’s oncologist. Main problem was tummy pains/some ascites. Not sure, however, whether the tummy pains were the chemo or the anti-sickness drugs.
Bone mets continue to wreak pain and we were fire fighting with radiotherapy. Then two weekends ago Mum woke up to such pain in her cervical vertebrae that we had to have her hospitalised. We thought she had fractured her neck or it was spinal cord compression. AN MRI confirmed it was just bone mets. She was discharged from hospital 3 days later with a new medication list, and a prescription for five fractions of radiotherapy to the cervical vertebrae area.
We followed the new pain medication list (which caused periodic wipe out for Mum) because it included diazepam provided by the hospital. A BIG MISTAKE. Mum then had a fall (solely related to the diazepam) trying to get herself out of bed and now has a fractured upper arm. She was hospitalised again last Monday and was discharged yesterday….hopefully they have now got the pain medication under control.
Biggest lesson here….which I actually believe was regrettably screwed up by Mum’s medical team on this occasion…is that when moving a patient onto a newer and stronger pain medication regime (previously she had managed with Paracetamol) and Naproxen), alarm bells need to be raised with both patient and carers to prevent against falls caused by intermittent drowsiness caused by Diazepam. So unfortunate. Mum did not need a broken arm as well!!
We are now moving into a situation where Mum will need a carer at home full time…. which I am organising. We will use the Hospice facilities and others when we need a break. My preference is to try to keep Mum at home. The Hospice is lovely but sterile…like a hospital.
Not very good news I am afraid.
For Mum’s pain medication she is on Pregabalin 75mg, morphine 10mg (slow release), Liqiuid oramorph (for bad period of pain), Naproxen and paracetamol
She is still getting up and around the flat (which I have kitted out with more disability aids)…but the fractured humerus has really knocked us for 6. Mum has to be helped to the toilet now.
Not great news to share…but I hope sharing the experience might be of benefit to others.
I don’t think I/we will be pushing for any further treatment now to prolong life. We will leave these decisions to the clinicians. My preference now is that Mum be made as comfortable as possible and as pain free as possible.
Kevin xJune 7, 2015 at 6:05 pm #86938
Great to hear from you and thanks for letting us know how your mum is doing. Glad to hear that you were able to get her to the day care center to see how she liked it or not and at least she did not hate it outright! And as you say, maybe the seated yoga will swing it for her and encourage her to go back and try it again!
I agree with lainy about the pain thing and getting that sorted in advance should the need arise for that to start. But I can understand your mums reluctance to consult with the specialist just now and gentle easing from yourself may help with that issue.
I will keep my fingers crossed for your mum and the FOLFOX and so hope that that goes well. Loads of positive thoughts heading south to you!
My best to you and your mum,
GavinJune 7, 2015 at 2:49 pm #86937
Dear Kevin, I am so pleased that Mom is doing OKish, which is better than not good. I just want to pop in here and say that it is great she has no pain but a plan is needed just in case. Once pain could begin Mum need immediate coverage as you never want that to get out of control. I would give her a little time but gently bring it up again. I am glad she wants to get her hair done and join in the group as that shows a good attitude. Wishing you all the best.June 7, 2015 at 11:06 am #86936
I am very pleased Catherine to see that you Mom is holding up well. I hope you have (are having) a lovely trip to Cape Cod.
Mum’s latest is that she is OK…ish. We had mixed scan results from her onc on June 2.
The onc is now going to take Mum off of GEM/CIS (she did 11 cycles of Gem/CIS in all) and move her onto FOLFOX to commence next week. I see from on here that FOLFOX has had mixed results for others ….so I suppose we just have to hope for the best!!
We took Mum along to the hospice/Day Care centre for an initial assessment/introduction. There were tears and it was difficult….but she said she might pop back to have her hair done and quite fancies the idea of some art therapy and seated yoga . We will have to see. At least it is “accessible” now if we need it/she would like to go along
My latest “difficulty” is that the lead onc (Mum has two-her lead onc and one for radiotherapy treatment) is now insisting that Mum consults with a specialized “palliative care doctor”. This is a “pain” doctor. Mum does not want to see a “pain” doctor until she has pain…which she does not have at the moment. She also sees the idea of a specialized “pain” doctor as acknowledging in part her demise (a bit like the hospice), so I suspect I am going to have a difficulty with her on this as well.
Anyway…at least Mum is still pretty pain/ache free. for the time being..which is a big blessing.
Lots of love and hugs to all on here
Kev xMay 21, 2015 at 9:36 pm #86935middlesister1Moderator
Thanks for the update on your Mum- wishing you the best!!!!
Gavin- Love the photo
CatherineMay 21, 2015 at 6:49 pm #86934
Well…I see what you mean Your Dad certainly looked as though he was having fun there!!. Thanks for sharing…a really nice pic.
I had a chat with the Day care centre triage nurse today…and they are going to let me have an outpatient appointment shortly for us all to go along for a visit. I will let you know how we get on. Perhaps Mum might love it….for a change…hope so!!
Mum is very happy today. Her blood levels have stabilised and her onc has put her back onto GEM/CIS for her chemo today at hospital. She was not happy when they took the Cisplatin away last week.
Anyway…off to the hospital shortly to pick her up.
All the best to you and your family
KevinMay 21, 2015 at 5:46 pm #86933
It is indeed good to try and if your mum does not like it then she can just say no and not go back. Nothing ventured nothing gained I would say but each to their own.
As to my dad partying at the day care centre, you could be right on that one. Here is a pic of him at their Halloween day…..
My best to you and your mum,
GavinMay 19, 2015 at 7:03 pm #86932
Thank you so much for all of that detail on the Day Care centre and hospice that your Dad attended. It sounds as though he was having a party there with the massages and the food
I think we will need to give it a try…Mum included. I think I will start with the MacmIillan Nurse at Mum’s home and then we will try to gradually edge Mum along to the Centre. I have heard great things about some of these hospices and their day/other activities
I also think that your post touches on an important point (engaging with a community) that I was discussing with my brother over lunch today. Mum has not really mixed with anyone whilst having treatment over the last 14 months. That is because when she has had her chemo she has been in a private room in a private hospital. I am not sure that this is the best way for it to happen…and it might do Mum some good to be around other people having treatment etc. I can also see the downside here as well…perhaps it can be overwhelming to be with so many people in a similar situation. I am sure others will have their own strong thoughts on this!!
Anyway…I suppose a visit to a Centre for a few hours for Mum might be interesting…and then she can make up her own mind. If she doesn’t like it…that will be cool as well…and i am sure she will let us all know her preferences. It is perhaps good to try!!
Thanks again for the encouragement/support.
kevinMay 19, 2015 at 6:13 pm #86931
I so hear what you are saying re day care centres, hospices and all of that and that was what initially put my dad off from going when it was suggested to him from his Macmillan nurse that he go and try them. And, the day care centre here in Dundee is attatched to the local hospice too which didn’t help! My dad also equated hospice with dying and so many of our family over the years had spent their last days and weeks in that hospice and indeed my dad did as well at the end.
However, let me just say that the day care centers are not what your mum or my dad for that matter imagined they would be. I took my dad for the first just to see what he thought of it and what they offered etc as he was sceptical as you could imagine. When we got there they showed my dad around, what they did and what they got up to and he liked it so he agreed to go once a week. He ended up loving it so much that he started going twice a week. They have male only days, female only days and mixed days. They have Macmillan nurses who run the days and they take great care of everyone and they have gp’s that you can see if need be. They offer a wide range of activities there, various complimentary therapies and you get fed loads too! In Dundee they had a chef that would come in and cook specially for everyone and they also got singers and other acts to come in and perform too.
My dad also used to get a reiki massage each time to help him relax and he loved that loads. I do think that your mum would enjoy it and perhaps in time you could suggest taking her yourself to see what it is like. She might enjoy the company too of people of a similar age in the same circumstances as herself.
People here on the site who know me and read my postings back in 2009 of my dads experiences of the centre would be able to vouch for how much my dad enjoyed it! I wrote quite a bit about that back in 09 if you want to search for my postings from back then. I’d put a link to them in this post but linking to old posts does not seem to work now and we all have to search ourselves for old posts etc.
My best to you and your mum,
GavinMay 19, 2015 at 8:19 am #86930
Hi Gavin and Marion
Thanks for getting back to me on my message. That all is all very helpful stuff.
Gavin-I agree with you on the potential benefits of Day Care centres. The problem is that we regrettably are still calling most of them hospices here. Mum (probably like many others here in the UK/elsewhere) still equate a hospice with somewhere that you go to die…so I can see that we will get some resistance/upset there….if mentioned to her. I think we will just say that a Community Nurse is coming to visit and gradually introduce it that way.
Your suggestion on engaging with a Day care centre (hospice) is timely, however, as Mum’s onc suggested exactly the same thing to me last week. They appear to offer nursing and help in the community/home and most importantly respite care if we cannot look after Mum at home…if she gets poorly. I am not going to turn that away…and I felt some relief in filling out the form for Mum’s GP to make the referral.
Marion-thank you for the technical/medical summary. Mum was transferred by her onc onto Gem alone last Thursday. Mum was distraught over “losing half her chemo treatment”. The onc’s explanation was that he wanted to temporarily suspend Cisplatin on the basis that Mum’s platelet count had been low. I can see this is all a juggling act….which one has to leave to the onc. Carry on with a certain chemo…and you screw up the blood levels…and then you cannot have any chemo at all!!
Marion-one point I might differ with your summary is describing SIRT as “minimally invasive”. It is quite the contrary to my mind. It is the actual insertion of radioactive beads by catheter directly into the liver. SIRT is a “serious” procedure because of the risk of the radioactive SIRT balls flying off to other parts of the body where they can cause very harmful and painful ulceration. Thankfully, Mum’s SIRT procedure was all fine and we did not have SIRT balls going anywhere other than to the target…though it looks as though the procedure did not have much impact (on the liver tumour/mets) for Mum.
Anyway…as always it is really helpful to share thoughts and concerns and receive responses from the Community
Thank you and hugs
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